Tuberous sclerosis complex is a relatively common genetic disorder that affects different individuals in different ways. Some affected individuals can spend most of their lives not even knowing that they have the disease, while others can be significantly affected even from an early age. TSC can affect many different organ systems in characteristic ways, but it is impossible to predict which symptoms will impact any individual patient. This creates great uncertainty for a person newly diagnosed with TSC, or for the family of a child with TSC. What will the future hold? No one can know for sure, but clear information can help to demystify the disease and help in the development of an effective management plan for handling the disease.
Carol and Jim Herscot have lived though this uncertainty. They have worked very hard to make sure that no family or person affected by TSC needs to struggle (as they have over the years) to find clear and accurate information about this disorder and to access care for a loved one. By establishing the Carol and James Herscot Center for Children and Adults with Tuberous Sclerosis Complex at the Massachusetts General Hospital, the Herscots have created a comprehensive clinical center for diagnosis and treatment of TSC for both children and adults. The Herscot Center also provides educational programs about TSC both for families and for clinicians.
The Living with TSC Web site is a collaboration between the Herscot Center and WGBH Educational Foundation. Our goal is to provide clear information about the range of medical consequences of tuberous sclerosis complex throughout one's lifetime. The sections of the site will guide you to basic information about the disorder (see Tuberous Sclerosis Complex), descriptions of how various organ systems are affected by TSC at different times in a person's life (see How TSC Affects the Body), the coordinated care approach that our clinic uses (see Coordinated Care), and an Interactive Timeline that gives an at-a-glance look at issues relevant to individuals with TSC at different ages.
Throughout the site you will find videos featuring our specialists and supporting text that explain the range of symptoms and treatments for TSC. We have also described the latest advances in our scientific understanding of the causes of TSC, offering hope for future treatments.
Perhaps most importantly, through the video profiles in the TSC Family Stories section of the site, you will meet some of my heroes. These individuals and families live with the hopes, the fears, and the reality of TSC every day. Each has a different and individual story, and yet their stories are similar in that all are living with TSC.
Elizabeth A. Thiele, MD, PhD
Director of the Carol and James Herscot Center for Children and Adults with Tuberous Sclerosis Complex
and the production team at WGBH Educational Foundation